An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis

Karine E. Manera, Allison Tong, Jonathan C. Craig, Jenny Shen, Shilpa Jesudason, Yeoungjee Cho, Benedicte Sautenet, Armando Teixeira-Pinto, Martin Howell, Angela Yee Moon Wang, Edwina A. Brown, Gillian Brunier, Jeffrey Perl, Jie Dong, Martin Wilkie, Rajnish Mehrotra, Roberto Pecoits-Filho, Saraladevi Naicker, Tony Dunning, Nicole Scholes-RobertsonDavid W. Johnson

Research output: Contribution to journalArticlepeer-review

21 Citations (Scopus)

Abstract

Shared decision-making about clinical care options in end-stage kidney disease is limited by inconsistencies in the reporting of outcomes and the omission of patient-important outcomes in trials. Here we generated a consensus-based prioritized list of outcomes to be reported during trials in peritoneal dialysis (PD). In an international, online, three-round Delphi survey, patients/caregivers and health professionals rated the importance of outcomes using a 9-point Likert scale (with 7–9 indicating critical importance) and provided comments. Using a Best-Worst Scale (BWS), the relative importance of outcomes was estimated. Comments were analyzed thematically. In total, 873 participants (207 patients/caregivers and 666 health professionals) from 68 countries completed round one, 629 completed round two and 530 completed round three. The top outcomes were PD-related infection, membrane function, peritoneal dialysis failure, cardiovascular disease, death, catheter complications, and the ability to do usual activities. Compared with health professionals, patients/caregivers gave higher priority to six outcomes: blood pressure (mean difference, 0.4), fatigue (0.3), membrane function (0.3), impact on family/friends (0.1), peritoneal thickening (0.1) and usual activities (0.1). Four themes were identified that underpinned the reasons for ratings: contributing to treatment longevity, preserving quality of life, escalating morbidity, and irrelevant and futile information and treatment. Patients/caregivers and health professionals gave highest priority to clinical outcomes. In contrast to health professionals, patients/caregivers gave higher priority to lifestyle-related outcomes including the impact on family/friends and usual activities. Thus, prioritization will inform a core outcome set to improve the consistency and relevance of outcomes for trials in PD.

Original languageEnglish
Pages (from-to)699-710
Number of pages12
JournalKidney International
Volume96
Issue number3
Early online date28 Mar 2019
DOIs
Publication statusPublished - Sep 2019

Keywords

  • core outcome sets
  • kidney disease
  • outcomes
  • patient-centered care
  • peritoneal dialysis
  • trials

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